Rare Disease Advocacy

The Role of Advocacy in Rare Diseases

10 Tips for New Rare Disease Advocates from Current Ones

National Organization for Rare Disorders (NORD)

Advocacy Group Brings Attention To Rare Diseases And Disorders

Rare Disease Advocacy

Connecting Rare Disease Patient Communities and Advocacy Groups

The Importance of Advocacy Groups for Rare Disease Patients

Rare Disease Advocacy Groups

Rare Disease Patient Advocacy Day

U.S. Food and Drug Administration

Adrenal Cancer Patient Panel, November 1st 2024: Adrenal Cure Collective

Adrenal Cure Collective

Webinar: Advocating for a rare disease

Rare Disease Advocacy and the Rare Disease Film Festival

A Rare Disease Patient Describes Her Work in Advocacy

Rare Disease Patient Advocate Sarah Bacon | Rare Disease Treatments: Regulatory & Policy Reform

The Hill Events

Rare Disease Advocacy and Research at the University of Notre Dame

Notre Dame Science

Rare disease patient advocacy summit in Orlando

Elizabeth Halford

Charles Steward, Lead, Patient Advocacy & Engagement at Congenica talks about rare disease

NORD With KAT6A Rare Disease Advocacy Story

KAT6 Foundation

Advocacy in rare disease: Crafting the public narrative - Webinar (teaser)

Fondation Ipsen

Advocacy on National Policy on Rare Disease Introduction

RARE Advocacy Summit 2023 -- Rebel Health: How Rare Disease Communities Lead the Revolution

Global Genes - Allies in Rare Disease